Give the gift of life by donating your medical records

There are huge benefits to using confidential records in England for research purposes

Those of us who work with medical research charities already know how generous the public is when it comes to helping others. Those charities are now asking supporters to consider making a new gift – one that requires no opening of the wallet or giving of blood or other tissue. They want you to donate the information in your medical records.

Pictures of a young boy appeared in adverts in the press with the caption: "Hello, I'm Peter. We haven't met before but one day you could save my life." It was an emotive campaign by a group of medical charities, and it was designed to encourage the public to find out more about the power of sharing their data – but the message is true. For example, large medical data sets enabled the link between smoking and cancer to be proven and the supposed link between autism and MMR vaccines to be debunked.

The charities are acting now because an opportunity to decide what to do with medical records is fast approaching.

The National Health Service in England has the ambitious plan of opening up of all records held by family doctors in an anonymised form from April. Leaflets are going out to all homes in England this month explaining the scheme. The result should be a huge data set, spanning the population and going back decades, which will allow important research questions to be answered.

Success stories

For those not yet persuaded about the power of this approach, there are other good examples. A recent British Heart Foundation funded project reviewed 370,000 patients, almost half of the people living with heart failure in the UK, and showed that fears that drugs for high blood pressure might increase the risk of cancer were unfounded. This study simply would not have been possible without access to the 5 million anonymised records already in the General Practice Research Database.

A similar project analysed data stretching back 50 years to assess the effect of taking the contraceptive pill for a long time and, by linking to mortality data sets, improved prescribing guidance.

How could anyone object to the principle of sharing? It is clear the value of the data held by family doctors, also known as general practitioners (GPs), is immense, so they must be willing partners in this. There are reports of some reservations among doctors who are fearful that a long tradition of protecting medical records in their surgeries is under threat. But it is clear that this is overwhelmingly what the public want. Polls tell us that most people feel the same: a 2011 IPSOS Mori survey of about 1000 people showed that 80 per cent of the public were happy for researchers to have access to confidential medical records.

Additionally, the value of this data is multiplied by the ability to link it to other sources, as in the contraceptive pill study that linked GP records to databases of cancer and mortality.

Re-identification

These records are some of our most personal and sensitive information, so it goes without saying that they must be stored carefully and used with care and respect. The planned database will strip data of all identifiers and make sure that researchers only have de-identified data.

The planned safeguards seem strong. But no system can be risk free – there may be rare cases in the future when the codes will be breached. We need to weigh that theoretical possibility against the immense gains to research now. If we wanted to eliminate risk completely from our lives, humans would do nothing.

That is not to say, though, that the information from the NHS in England to help the public reach a decision has been perfect. I would like to see the supporting information be clearer about who will and, crucially, who will not have access to this data.

No surprises

We should not be afraid, for example, that commercial researchers might use the data for ethically approved medical research projects, but it must not be a surprise to us when they do. New drugs and devices need the involvement of pharmaceutical and biotech companies.

And the leaflet should be clear that insurance companies and government departments that aren't involved in medical research or providing care will not have access to the data as a matter of right.

There is great potential benefit here. Charities are asking us to consider those benefits, the proposed safeguards and our own personal instincts before coming to a view. It is clear that people feel a strong sense of altruism to the cause of medical research. If the NHS can demonstrate that they will use it wisely, the overwhelming majority of the public will generously donate their data too.

PROFILE

Sharmila Nebhrajani is chief executive of the Association of Medical Research Charities, based in London

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